I'm not taking my medication. Is this a problem?

[SaraT]

I am a 31 year old female. I had my first grand mal seizure 2 years ago. Before the seizure I felt out of it and was starring into space for about 7 seconds on two different occassions within a 1/2 hour period. Then, I fell down and had the grand mal seizure. It was an issolated event so I thought. I had an MRI and an EEG both of which came back normal. Afterward, over the course of about a year, I began to notice very short absent spells when speaking to others. It was not very often and could usually be linked to poor diet or lack of sleep. The absent spells lasted only 1-2 seconds at most and only happened maybe 1 or 2 times a month. However, they are so short that unless I was mid sentence and speaking to someone, I would probably never notice that I had one. I do recall after being aware of these absent spells that I had a few of those spells (maybe 3 over the course of my life) all lasting 2-3 seconds before the grand mal seizure. I had another EEG and they found 1 spike and wave pattern induced by hyperventilation. My neurologist diagnosed me with complex partial seizures and perscribed Keppra but I did not regulary take it. I have always been terrible at remembering to take pills and I didn't really feel like this was a big problem in my life. I am very intelligent with 2 young children and a busy career and I felt fine so I just discontinued taking the meds. I started training for a marathon and noticed that when I was running regularly and getting enough sleep - I never had an episode. Now, I might have an episode once every 1-2 months and even then I am not sure I am having one. But, again maybe I am having them more than I think and unaware of it. My question is - do I need to be back on the medication? It seems to be a very mild epilepsy - but because the absent spells seemed to develop into a grand mal seizure that one time, I am worried that I could have another big seizure and hurt someone while driving. Also, even though they rarely happen, it is embarrassing to have an absence seizure, even though they are very short, when speaking to a large group of people. Usually the people I am speaking to just look a little confused and then I think they probably assume I just lost my train of thought for a moment. Can this be controlled through diet and exercise? What criteria have to be met to put a person on medication - or take them off? Does this sound like a very mild form of epilepsy? Also, I have an identical twin sister who had 1 grand mal and many absence seizures a day when she was a child but she outgrew it. Could this be genetic? If so, is medication then more necessary? Why would I suddenly develop epilepsy as an adult and not have any episodes in childhood?

 

[RobinN]

My daughter is med free, but she has made dramatic changes in her daily nutrition. You can raise your seizure threshold with alternative methods, and see improvements. If I had to do it all over again, I would not go the med route. It only cause our life to turn upside down.

It took a lot of pushing to get specific testing done on my daughter and it has shown that she is hypoglycemic which was not even considered for the first three years. The neurologist said she knows nothing about it, and only offered us a "new" drug.

If you are proactive in your care you can in my opinion possibly find ways to raise your threshold. I learned here, that everyone has a seizure threshold. Yours for some reason has been lowered as you have aged. My daughters was lowered at the age of 14. She is now 17.

*P.S. - I do want to add that you will get a lot of grief from conventional doctors for not taking meds. This is all they know, and they will try to convince you that it is the ONLY treatment. There is far too much research and info being done on alternatives, and diet/nutrition that proves that belief FALSE.

 

[Nakamova]

I agree with Robin -- you might want to see if you can cut down on your seizures by tracking potential seizure triggers (diet/metabolism, sleep, exercise, hormones, etc.) in a journal. I would also keep track of the seizures themselves -- if they seem to be increasing in frequency, duration or strength then you might want to consider the medication route again. One other drug-free approach to consider is neurofeedback.

Best,
Nakamova

 

[epileric]

There are a lot of people on this site who have developed epilepsy later in life, some of them never find out what might have caused it.

Personally I would say be very careful if you've stopped taking your meds. Keep track of your sleeping, eating, & activity schedule as well as when you have bowel movements & seizures. Hopefully this will help you find what is triggering them. Meetz has a good list of things to do to keep track of. Also, Read up on what you need to do to increase your seizure threshold and lessen the chances of having another seizures.

What I think people should do is weigh how much their seizures effect their life against how much their medications help/worsen their living situation (usually by lessening seizures or having too many side-effects).

Good luck whatever you chose to do.

 

[SaraT]

Thanks and Keep it coming!

:rock: This site rocks! Thank you for the advice and please keep it coming. The more I know the better. One question: I have no idea what triggers a seizure except possibly lack of sleep. However, if I had one spike and wave pattern on my EEG during hyperventilation, does that mean that hyperventilating could cause a seizure? I did notice when I was running hills once and get too winded I had a seizure- it happened a few months ago but again it was so very mild. So, is a seizure still a seizure if it is very short and almost unnoticable? And how many spike wave patterns are typical during an EEG - could the fact that I had only one spike and wave on a sleep deprived EEG mean that I really am just borderline? I know epilepsy is just a label but if I am truly epileptic and a big seizure could happen again then I feel I should do something (like take meds) to make sure I don't injure myself or others. But if 2 years after a grand mal with not big seizure recurrances puts me at the same risk as your average joe, I'd rather not take pills that make me listless.

 

[RobinN]

There are children that are sensitive to gluten that when fed wheat, they have abnormal EEGs.

Yes, hyperventilation in your case might cause a seizure, or it just might be oxygen levels. We have to go further IMO than that and find out why, when you hyperventilate do you trigger seizures.

Hypoglycemia can cause seizures. Food sensitivities can cause seizures. It can all be accumulative. It can be over days, weeks, or months that lower your seizure threshold. My daughter had been having seizures 6 x month, and I decided that being med free, far outweighed the side effects that the different meds we tried created. I talked with a vet online, that had story after story of eliminating seizures in his animals by making nutritional changes.

FACT: there has been an increase in celiac disease by 400% in the past 50 year.

I had never heard of celiac before reading about it on http://www.dogtorj.com site.
Meds hurt my daughter, making nutritional changes did not. Of course it was uncomfortable for her, but in the long run she is willing to say she feels better overall.
We have a ways to go.

HFCS a terrible additive in foods.... as is aspertame and MSG (+ the 40 different names it is called). Gluten, Casein, Soy and Corn are all made into industrial glues. (remember Elsie the cow on the Borden Glue bottle... now it is Elmer. They don't want you confused). This glues up your intestinal tract and the villi (finger like surface) get gummed up and can't absorb the nutrients your brain needs to function. Causing autoimmune issues too.

Lots to digest (over time) so I hope this will make you consider the bigger picture.
That's my opinion, and not a medical one at that. However, I have seen improvement in my daughter's seizure patterns, and want to share our journey.

 

[SaraT]

Sensitivity to labels

I also must add here that watching my sister have seizures as a child and seeing the way my parents dealt with it - shame - and big family secret never to be told - hummliation on the part of my sister - I am adverse - even as an adult with a wonderful husband and family to having the label epileptic put on me. I know that I didn't really forget to take my pills. I don't forget to feed my children or run every morning. But I was afraid of the label, and also that even though Keppra was not shown to cause weight gain that I would gain weight. I was anorexic in college - not hospitilized or labeled as such but I was within the weight of someone who would be labeled anorexic. I am healthy now and work out and eat healthy but I am pretty thin - 5'8 and 115 lbs and I do not want to gain weight. I was afraid the pill would make me gain weight so I just didn't really set it as a priority to take it like I set my morning runs as a priority. If the anti seizure meds had a liklihood to suppress your appetite - you bet I would have taken it everyday. But, over the course of the year I feel I have made healthier decisions about eating and weight and I am ready now to start taking an anti seizure drug if it is warranted and doesn't make me feel loopy or have crazy side effects I can't live with. I just can't tell if taking medication would be the right choice or not.

 

[epileric]

I just can't tell if taking medication would be the right choice or not.

The problem is that all anti-epileptic drugs have possible side-effects & one never knows what (if any) side-effects will effect you until you try it.

If you're scared of side-effects but not pills I"d say try what your doctor prescribes but read up on the possible side-effects. If you have a partner show them as well so that you can both watch to how/if you're effected.

I"d also recommend telling the neurologist that you plan to do this so that s/he will be more prepared to try something else if the side-effects are too severe.

 

[Nakamova]

EEGs are only part of the story when it comes to diagnosing and treating epilepsy. There can be both false positives and false negatives with EEGs, and while sleep deprivation and hyperventilation are used as part of the EEG test, they are usually indicative of a lower seizure threshold rather than as specific triggers.

That doesn't rule out sleep and oxygen or circulation issues as factors to consider as you try and raise your seizure threshold. There can be more than one factor, particularly as the brain gets in the habit of seizing.

The risk of increasing seizures is one thing weigh as you decide about medication. The risk of side effects is another. The more info you have, the better able you will be to make your decision.

Best,
Nakamova

 

[Crystal11]

I am an identical twin and my twin also has deafblindness and complex partial seizures. We were born three months early and had many problems just being born. We both died several times and had many surgeries and meds. Anyways- when we were six we had absence seizures but did not take meds since it was "mild" in our opinion and we were also in school too.. teachers noticed but I guess Mom didnt see the need for meds at the time. I think I am having absence again, either that, or I have never stopped having them. My friend and my Twin have noticed them and I don't even know. I know about my complex partials, and my neurologist told me it could spread further and become a grand-mal/generalized.
My twin is not on meds- she is stubborn and doesn't want to hassel with meds, while me, I take Keppra and Tegretol XR and do a little better seizure wise.

Absence seizures are a pain once they happen many times in a day. I would definatly take meds even though its mild for of seizure. You still have epilepsy but your form of seizure is mild and may not cause too much trouble for you. Its up to you, but to me, no seizures are best.

Take care,
Crystal

 

[knothing]

Labels only hinder us when we allow them to. I have epilepsy and I don't care what anyone thinks about it. I know after a grand mal seizure that people at my work and my family will treat me differently but I am more than happy to remind them that I am still me and to knock it off. Some are stunned by this at work but always say good for you way to not let this affect you. I understand this attitude they get because after a seizure it really takes me about 2 to 3 days to be mentally back on top of my game.

Only you can allow a label to imprison you.

Now about working with a Neurologist. Some have had issues with them and see them as only bad, this is not always the case. My Neuro is good but admits that there are others in my area that deal with epilepsy only and he encouraged me last week to pick one and go for a second opinion. His treatment of me is only as good as the information I give him. I know if I was in your position that I would find a Neuro that would work with me to find a treatment that works for you and is what you need (meds or not). You control your treatment.
About meds if you can't take them on time you can cause issues for youself. First question a Dr will ask after a seizure is did you miss a pill because this is a cause for having a seizure. With meds you are raising you seizure threshold with medication.

We all face the question of am I making the right choice for me. Trial and error is really the only way to find out. You have control of your treatment and if not you need to take control. Educate,evaluate and eliminate. Educate yourself about seizures, evaluate your life and options , eliminate your seizures.

Sorry for the long response and I wish you the best.

 

[dfwtexas]

Is your neuro aware you aren't taking your meds? Did he assist you in weaning yourself off them? I think you need to contact your neuro and have this discusssion with he/her

 

[Meetz1064]

Hi, hello

and how do you do? Sorry it took me so long to get here to greet you, I've been pretty sick, so I get here when I'm actually awake, and somewhat coherent. :roflmao:

Robin's right in that some seizures can be controlled with diet instead of medication. Her daughter Rebecca, one of the mods--Zoe, are examples, and I believe there are several others, too, I just can't pull the names up in my head at the moment, sorry.

However, in order to do so, you MUST keep a detailed E journal. It is a good idea to keep one anyway in order to help both you and your doctor try and figure out some triggers for your seizures if you have any. That said, here's the list that Epileric referred to. Oh, and some people do add in the movement of their bowels, as that has also been known to trigger seizures, too.

**********************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM.

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses To The Above List


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.


*********************

I'm sure that's a lot to take in, and i'm sorry. But in the long run, you'll find it quite helpful.

Feel free to hang out, ask questions, and kick up your feet. Mr B, our host, has built us an AWESOME home here. The Library and Kitchen are great for information and the Padded Room is great for venting when you really need it--trust me, we've all been there a time or two.

Take care,

Meetz
:rock: